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Reaching the goal line……
I did reach my 2 yr anniversary of probably when my PMR started 12/28/2023. I am pleased to report that I am definitely on the up side of life. Hiking, biking, swimming, and walking the golf course with my golf bag robot. Lots of everyday tasks are “back” and or easier. Next up, my goal is to be off the Kevzara, my last drug, by 4/15th followed by my 80th birthday 🎂 end April.
Hang in there everyone….it will comeback…..use this group and all the resources you can reach out to. Don’t give up.
Thank you everyone 😍
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Great news! Keep up the good work and keep tracking symptoms!
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1 ReactionThank you for those encouraging words. I’m 79 and beginning to think I was too old to ever be like I was before.
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4 ReactionsCongratulations!!
You are an encouragement to all of us who are still struggling! Keep up all those activities. One day we will get there, too!
Question: I was on Kevzara and it tanked my blood count numbers. Then moved to Humira which didn't help at all. Have also been on prednisone (not again) and methotrexate. No pain relief from any of them. What other meds besides Kevzara were you on? I asked about Rinvoq but because it is black-boxed, doctors will not prescribe it for me. Last night I had symptoms of GCA and will be checking in with a new opthamologist.
Any ideas for pain relief?
@susanlf
Only Kevzara. My numbers tanked too and Dr chged dosage on Kevzara. Shot every 3 weeks instead of every 2 wks.
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1 Reaction@tweetypie13
Have you been able to determine yet if every three weeks has made a difference in your numbers? I’ll be getting labs done in a couple weeks ( my 8 week labs) so I’m anxious to know where I stand.
@caroljeand
After 6 weeks and new tests, Yes my numbers improved. Both Neutriphils and WBC. Assume Dr will lv dosage at 3 wk intervals.
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1 Reaction@tweetypie13
Good to hear. I would be glad to extend the time between injections!
Haven’t even heard yet if I’m approved for 2026 though.
We share a PMR anniversary tweety bird ! Although I went on to large vessel GCA too 12mths ago.
I’m off all treatments & all medication now as of recently.
Feeling fine and pathology excellent.
It’s possible.
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1 Reaction@maye33
And a Very Happy New Year to you, my “anniversary mate”.
May the good vibes/work stay with you in 2026.
PS: interesting note, my Rehumy had me taper dose of Kevzara to every 3 wks to get my WBC and neutrophils back in line. It worked, now……
He wants me to GO BACK TO every2 wks Kevzara.
All thru patient portal.
Never asked how “am I doing, etc..” and come into office for nxt blood work. 🤔
Maybe a “bot” is doing his work, because no one has read my chart.
Sorry this is long……my reply
“No, I don’t come to your lab.
My car was hit there.and it’s a 40 min ride each way.
I have done the last several labs at Sonora quest nr where I live …since April 17, 2025
Pls ask Dr to chg that.
DR, why do I NEED to increase the Kevzara?
I have been on Kevzara 3 weeks apart since 10/22 with no side effects, and my blood work was good on 12/17.
The CRP has not changed since April 21, 2025
The SED rate has not chged since Oct 31,2025.
I have not felt this good in 2 yrs. I take no other drugs. I feel so good that I don’t even know I have PMR 95% of the time.”
What’s wrong with this picture? Not a good start to the New Year for communication, maybe?
Stay tuned.
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2 ReactionsThat’s terrible! Want to hear the rest of this story.